Alzheimer's and dementia FAQ

Alzheimer's is a specific form of dementia, and the most common such brain disease. It is a progressive degreneration of brain cells that causes a decline in cognitive ability, loss of memory, and mood and emotional disorders. Doctors use a global deterioration scale to measure the seven stages of the disease, from no or mild memory lapses, to late-stage Alzheimer's where patients have severe cognitive impairment and memory loss, limited vocabulary and lose the ability to move, eat or use the bathroom independently, needing 24-hour care.

Sixty-three per cent of those with dementia have Alzheimers, while other forms of the progressive neurodegenerative disease include Vascular Dementia, Frontotemporal Dementia (Pick's Disease), Lewy body Dementia and Creutzfeldt-Jakob Disease. Although some drug therapies can slow progression and mitigate symptoms, the disease can't be halted or reversed and there is currently no cure.

It was named for German psychiatrist Dr. Alois Alzheimer who discovered in in 1906. The disease is not a normal part of brain aging, but causes protein plaques and fibrous tangles in the brain making it difficult for nerve cells to communicate with each other. The plaques and tangles in the brain are thought to be the result of oxidative stress, which has a toxic effect on cells in the body and brain. In Alzheimer's once a certain threshold is reached, the body can no longer metabolize and remove materials that then build up in the brain and interfere with nerve cells and therefore brain function. The disease is ultimately fatal within seven to ten years as the body is weakened by inactivity and muscle wasting and low immune response leaves people open to infections like pneumonia. There is currently no cure while its progressed can't be reversed, some drug treatments, like the use of cholinesterase inhibitors, have been shown to slow the rate of decline.

Who is at risk?

Risk factors include high blood pressure, high cholesterol levels and diabetes. Poor diets high in saturated fats that can lead to clogged arteries and strokes are also a problem.Head injuries can play a role, as can depression and obesity. Smokers are also more likely to develop dementia.

But genetics also play a role. Having a parent or sibling with Alzheimer's increases your risk two to three times. A form of Alzheimer's called Familial Alzheimer's Disease, which accounts for up to seven per cent of Alzheimer's cases, occurs at an earlier age.

And a primary, unavoidable risk factor is simply age. The number of Canadians aged 60 and older with Alzheimer's in 2008 was seven per cent. But by age 90, 49 per cent of Canadians had Alzheimer's.

Another risk factor? Being female. According to Rising Tide, women have both higher incidence and prevalence rates of Alzheimer's and dementias.

In fact, a recent University of California study found that fully half of Alzheimer's cases worldwide -- some 33.6 million people living with the disease -- could be traced to just seven common, preventable risk factors: smoking, physical inactivity, depression, high blood pressure, obesity, diabetes and low education, which is related to lack of mental stimulation.

The disease does not discriminate. Among the famous names of people believed to have Alzheimer's or a related dementia are Winston Churchill, Rita Hayworth, Ronald Regan, Rosa Parks and Norman Rockwell. Former Canadian Gov. Gen. Michaelle Jean has watched her mother struggle with the disease.

What areas of the brain are affected, by Alzheimer's, and when?

Alzheimer's is an insidious, progressive disease, affecting the brain. Here is what happens to sufferers as the disease progresses:

2. Recognition of objects, places and people is affected as the disease spreads to the parietal lobe.

3. Speech and language and awareness of time suffer as the disease progresses to the temporal lobe.

4. Sight begins to fail as the occipital lobe becomes involved and patients lose peripheral vision and have trouble following motion.

5. Walking, balance, sitting and gross motor coordination deteriorate as the motor cortex and then the prefrontal lobe are affected.

6. The disease-ravaged brain now loses the skill of reason, thought and judgment as the frontal lobe is impaired.

7. The body begins to shut down and sufferers come close to death as the cerebellum -- which controls heart, lung and digestive functions -- succumbs.

What can you do to prevent Alzheimer's and dementia?

There is no cure, but a healthy lifestyle is your best defense against the onset of Alzheimer's and related dementias.

Maintain a healthy diet rich in anti-oxidants like the Medditerranean diet. Try taking selenium and folic acid supplements. Drink a moderate amount of red wine, which has been linked to reduced dementia risk. Try spices like turmeric, as one of its components, curcumin may have some protective effects. Increase your intake of Omega-3s from sources like cold water fatty fish, which may help the brain.

Try to stay active, exercising your body and brain. IIncrease your physical activity levels, have an active social life, maintain intellectual activities and protect your head from injury. Stop smoking, find ways to cope with stress and depression, stay connected and engaged. And don't forget to schedule regular check ups with a family doctor you know, and bring up any concerns with memory or mental functionl They can arrange cognitive screening tests as needed.

I've been diagnosed with Alzheimer's or dementia. Now what?

After diagnosis, connect with support groups thought the Alzheimer Society of B.C. which can offer guidance to people with dementia and their families and help them find resources and assistance. Programs like FirstLink, which connect families and people with Alzheimers with community programs and provides education programs and strategies for care. Your doctor may prescribe a cholinesterase inhibitor to reduce memory and cognitive declin symptoms.

Think ahead. Make sure you have enduring Power of Attorneys set in place for when you can no longer make your own financial or legal decisions (it does not cover health decisions). If you are unable to make your own health care decisions, that power falls to your closest relative, your spouse or children. You can draft a Representation Agreement in advance designating someone to look after your health care and personal care affairs, if you wish it to be someone else. Make all your wishes known in a will and end-of-life plan well in advance. And it's important to make sure when arranging life insurance that you are covered for dementia under critical incident insurance.

What programs and resources are out there for Alzheimer's and dementia patients and their caregivers?

The Alzheimer Society of B.C. offers free workshops and seminars for family caregivers, for people living with dementia, and on life after diagnosis.

Among them is First Link, a program that links people newly diagnosed with dementia and their caregivers with programs and services to help them cope. The program runs in Richmond, Victoria, Nanaimo, Burnaby, Kelowna and Prince George. Email firstlink@alzheimerbc.org to learn more.

Another new program, Minds in Motion, is a fitness and social program for people in the early stages of memory loss due to dementia established this year at two sites in Richmond and in Vancouver. It encourages people with early diagnosis to come with their caregivers and learn to establish healthy living patterns to help slow the progression of the disease. Call the Alzheimer Society of B.C.'s Dementia Helpline toll-free province-wide at 1-800-936-6033 to learn more.

How can we cope?

The needs of people with Alzheimer's vary depending on what stage of the disease they are in. But all patients would benefit from certain improvements in the system, experts say, including more early intervention programs and public awareness, comprehensive dementia education for family doctors, more funding for dementia research, more support for caregivers, and an expansion of available long-term care facilities to provide for spaces for patients.

As people can live 10-12 years with the disease, much of dementia care needs to focus on improving their quality of life once diagnosed.

"The numbers are astounding," said Dr. Roger Wong, a geriatrics specialist at Vancouver General Hospital and a professor in UBC's department of medicine. "We're seeing a lot more people with dementia symptoms and Alzheimer's. Prevalence has gone up and is projected to increase over the next three decades unless we do something different."

Wong, the president of the Canadian Geriatrics Society warns that we also need to think about who is going to care for these dementia patients: there is already a shortage of geriatricians in Canada, and a lack of health professionals trained in caring for the elderly and their conditions will only exacerbate the stress on our health care system in the coming years.

Rising Tide advises Canada create a national dementia strategy, including more funding for research, more work on prevention and early intervention, increasing the number of medical staff and specialists in the field, and adding and more integrated care and support for caregivers. It hopes that the report can provide a basis for that plan. In terms of public health, they suggest several interventions to try to stem the impact of dementia -- getting alrady active citizens to increase their physical activity by 50 per cent, try to delay the onset of dementia in several key areas, improve caregiver support and training, and make it easier for patients and caregivers to navigate the system as they look for help, by assigning them caseworkers. Overall, a dual focus on integrating community care and improving disease prevention and management is needed, the report concluded.

What is the impact on our health system and on home caregivers?

Over the next 30 years, the Rising Tide report predicts that the demand for long-term care for patients will increase over 10 times.The report predicts the number of long-term beds fordementia sufferers to increase from about 280,000 beds in 2008 to 690,000 in 2038, but that will still leave the system about 157,000 beds short. Many of these patients are expected to lean on home caregivers: seniors living at home with dementia are expected to jump from 55 per cent to 62 per cent of all cases. Experts see the trend to home-based community care continuing, placing a burden on families and outpatient-type services.

"Individuals with dementia are not the only people affected by the disease," the report states. "Dementia also places a long-term progressive burden on those who care for them," the report states. "Dementia usually implies not only a long period of profound disability and suffering for the person, but also severe strain and financial burden on the person's family and caregivers, as well as on health providers, the health care system, the business community and society in general."

What is Canada doing?

In Canada, the federal goverment has increased funding for dementia research through the Institute of Aging at the CIHR, from $4.5 million to about $21 million per year over the past decade. In 2009, the government committed another $15 over four years to fund a population study on neurological conditions like Alzheimer's and their impact on the country.The Alzheimer's Society funds roughly $3 million of research a year. It calls for the government to at least triple research spending to meet the future dementia epidemic.

Many provinces already have dementia strategies: B.C. has a Dementia Service Framework, as do Ontario, Manitoba, Saskatchewan, and Newfoundland.

B.C.'s framework, created in 2007, identified several key gaps in care including a lack of trained medical staff with expertise in elder and dementia care, limited knowledge of best practices for dementia care, inability of acute care facilities to meet the needs of people with dementia, and poor integration of services across care settings.

What are other countries doing?

Around the world, there are more than 35 million people currently living with dementia. Estimates expect that number to reach 115 million by 2050.

Governments in Australia, France, the UK and Scotland, Norway and the Netherlands have recently created plans for dealing with the rising tide of dementia patients in their aging populations.

Australia, for instance, has set up a helpline, funded more research, trained home caregivers and increased the availability of psychogeriatric consultations.

The Netherlands has created programs like peer-support Alzheimer's Cafe groups, created respite programs for home caregivers and patients so they can get away on holidays to recharge, and provided transportation to help patients get to medical appointments.

Norway has introduced national standards to improve services in nursing homes.

France has brought in a thousand new case managers to deal with Alzheimer's patients, launched a helpline and created specialist teams that make in-home visits to people with Alzheimer's so they can get medical care in place. The UK and Scotland have also increased funding for dementia research, launched early-diagnosis and prevention programs and worked on improving palliative care for patients.

What does the latest research say?

A vaccine was developed, but testing on humans was cancelled in 2002 after patients showed brain swelling. There are three main cholinesterase inhibitor drugs which can help promote clear-headdedness, but can't reverse the disease.

Some studies have shown that intense exercise can help protect the brain from dementia.

A Columbia University study published in Neurology in June found that the MRIs of subjects who exercised vigorously showed a 40 per cent lower risk of developing a kind of brain damage linked to strokes and dementias, as blood vessels in their brains were less likely to become blocked.

And Canada is also building a network of Alzheimer's research. The Canadian Institute of Health Research, for instance, recently organized an International Collaborative Research Strategy for Alzheimer's Disease (ICRSAD) which will drawn in research and expertise from many countries in the study of the disease.

Other research shows that denial about the disease seems to be waning, and as public awareness grows people report being more willing to seek out early treatment.

A recent Harvard School of Public Health survey of attitudes in five countries -- the U.S., France, Spain, Poland and Germany -- suggest that although Alzheimer's was the second-most feared disease behind cancer, eight out of ten respondents said they would go to a doctor for a diagnosis if they experienced memory loss, and almost all would take a family member.

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